Teen Athlete Shares Long QT Syndrome Journey


2019 was an extremely difficult year for Jay Crow. In February of that year, Crow lost his mother Megan, who was just 33 years old, to heart failure. Just a few months later, Crow began experiencing his own cardiac symptoms: more specifically, chest pain. After visiting the doctor and undergoing a wide array of testing, Crow was diagnosed with a rare heart rhythm condition called long QT syndrome (LQTS). But he has never let his condition get him down. Rather, shares an article in The Chronicle, Crow competes in both football and wrestling, and hopes that sharing his story will motivate others to see what they can achieve.

Living with a Rare Heart Condition

At seventeen years old, Crow has been a crucial member of the Winlock High School Cardinals football team; his coach lauds his positive attitude, grit, and will to succeed. Some concessions had to be made to allow Crow to play football. For example, the coaches needed to make sure that while Crow was playing, there was an automated external defibrillator (AED) which could be accessed within three minutes. 

While he greatly enjoys football, Crow’s favorite activity is wrestling. He finds that this sport challenges him in new and exciting ways. There is always a way to improve a move, grow stronger, or practice harder. Each week, Crow participates in at least four weightlifting sessions (if not more) and his coaches say that he is one of the hardest working and most intense athletes they have seen. 

This drive to always be better and do better influences how Crow lives every day. And, he says, being so active and in shape is also helpful for his overall health. Of course, he still sometimes experiences symptoms such as rapid heart rate or premature ventricular contractions (PVCs). Crow does take medicine to mitigate any potential issues. 

While he’s competing, he doesn’t let his condition bother him; he simply does his best with what he can do. And it is this positive mindset that will continue bringing Crow to new heights.

What is Long QT Syndrome?

Long QT syndrome is a rare and chronic heart signaling disorder which results from abnormalities in the heart’s electrical recharging system. This condition can cause fast, chaotic heartbeats which can lead to fainting spells, seizures, or even sudden death. While long QT syndrome can be acquired, it is typically congenital (i.e. someone is born with it). The congenital version occurs due to genetic mutations. Alternatively, the acquired version can result from low magnesium, calcium, or potassium levels, certain medical conditions, or certain medication use. 

In many cases, those with long QT syndrome are asymptomatic (showing no symptoms). For those who do experience symptoms, these symptoms are most common while exercising or post-exercising, during sleep or upon waking, and when experiencing emotional excitement. Oftentimes, the first “episode” occurs before 40 years old. Symptoms include:

  • Syncope (fainting)
  • Torsade de pointes (an arrhythmia in which the ventricle beats quickly and irregularly)
  • Blurred vision
  • Heart palpitations
  • Lightheadedness
  • General weakness
  • Seizures

Treatment options can include beta blockers, potassium, fish oil, pacemakers, and left cardiac sympathetic denervation surgery.

Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

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